Component testing poll

[booandbrimom]

I know I'm having "component testing" month...but the more I learn about the test, the more intrigued I am.

Where is everyone else on component testing?

[YouKnowWho]

I plan to talk to our allergist about it in the next month. 

The more I look at DS2 and his history, the more I wonder if he was truly allergic to food.  He definitely has allergies but wondering if what we thought were food reactions were something else altogether.  To the best of our knowledge, he has never reacted to an ingested peanut.  However he has had hives from touching peanuts in the shell (why he keeps grabbing them, I do not know) and has had hives on his arm where a friend touched him while eating a Chickfila sandwich. 

Our allergist is not conservative when it comes to food challenges - he is all for them but is hesitant to do so with DS2 because his numbers have been going up and not down.  On top of the fact that he is a hivey child (has a whopping case now with no known cause) and his total IgE is through the roof.

We need to know for personal comfort.

[Jessica]

I'm trying to have it done for dd but it's like pulling teeth around here.

[twinturbo]

Phadia has left hand right hand issues when it comes to corporate and labs. Corporate returns your calls quickly with local reps saying all the right things which makes it tricky once you talk to the labs because they have either no idea or don't care what the reps are doing. The key is getting your local phlebotomist to follow the directions on the box while you the patient fill out the entire form COMPLETELY including credit card even if there's going to be some other sort of payment arrangement.

The whole process is so decentralized and disjointed that my office has told me we were the first of two to do it and after that they will refuse any more due to logistics. If Phadia really wants this to get off the ground they will need to streamline the process by initiating relationships with more labs, after all these draws are almost exclusively pediatric in nature. It's not going to do to have random contractor X come to homes for draws on toddlers, small children. Especially when the level of professionalism is usually diminished without an office and its standards for procedure. Who in the world wants part timers with questionably sterile skin piercing equipment and little pediatric experience to solo a blood draw on their kids?

To be honest I'm already sitting in doubt of their forthcoming test results.

[Jessica]

I can't even get the local lab to agree to it at all. DD's ped said she would do the blood draw at no cost if I can get the test kit for her. But I'm having no luck with that. The Phadia rep supposedly went and talked to her but when I asked about it, she said someone came in and discussed rast testing. I called Phadia and was told that was not correct but they couldn't tell me if a rep had even stopped by. On Monday I'm going to call and specifically ask if I can get the kit myself and hand deliver it (along with dd, for the blood draw) to the office. But the dr said I would have to be the one to send it in. That's the sticky part.

[twinturbo]

We had the kit, all the allergist's office did was literally hand it over to me so I wouldn't hesitate to get it yourself even if you have to grit your teeth a bit through the chaos. The directions on it are pretty straightforward and if I remember correctly no temperature requirements. What I would micromanage is ensuring the sample gets to the lab properly once drawn.

[Jessica]

Thanks for the information. I am going to do what I can. I really hope we can at least do the draw before we go on vacation but if we could get results, and if they were negative, we wouldn't be any less careful but at least we might be able to relax a bit.

[Lisa]

I had it done for my Anaphylactic 5 year old and it was a breeze!  Done in my allergist's office and results back in like 9 days.  Covered by insurance and for those who use Quest Diagnostics,  it is in their panel of tests.

[GoingNuts]

Hopefully we'll do it next summer.  DS seemed squeamish about making any changes prior to leaving for college, and we both want more of a track record to evaluate.

[ajasfolks2]

It only allows one vote, so I said "No" for peanuts for the kid who has Pos SPT, Pos bloodwork, and history of ana reax.  Doc says it would likely be waste of money for that child.  (If we decide to "waste" the money, then would go ahead and tell the doc we want to afterall for quadruple confirmation.)

If I could vote second time, I'd say "Yes, but haven't scheduled yet."  That is for 2nd child who is + on skin & bloodwork, but no known reax . . . however, to our knowledge has NEVER eaten pnut. 

(We want to do for tree nuts for both kids, if available . . . . ).

[lakeswimr]

Is this a test insurance won't cover?  Would it be out of pocket for us?   Would you do it in our case--MFAs with for sure ana to everything in our list except peanuts and tree nuts which may have caused ana but for sure caused things like lip swelling and hives.  How would it change our lives if we knew peanuts wouldn't cause a life threatening reaction?  It might make us less stressed in certain situations (airplanes, etc) which would be nice.  maybe we would go to Fenway finally.    Would it change much else?  I"m not sure.  It would be nice if it gave us more foods DS could eat, more restaurants where he could eat, etc.  It would be nice if we didn't have to worry as much about handwashing and peanut-free tables, etc.  I don't know enough about this test.  Will ask the allergist next time we see him.   

[TwoDDs]

I just now read the Food Allergy b**** posts.  I don't think we would benefit from the testing - but I still intend to talk with Dr. Wood about it next time we're in.  If I recall correctly, his opinion was that children who Rast at greater than 100 are generally positive to multiple components - not just the "good" ones.  So, he assumes she would show a real allergy to peanut involving most (if not all) of the epitopes.  That said, she's never anaphylaxed to any nut at all - of course, she's never been knowingly exposed, either.  I have trouble believing that we've been that successful in avoiding - this is what makes me want the testing - but I'm sure he's right.  OK, that's my thoughts - I answered the poll - don't have enough info. yet.

[ajasfolks2]

man, it sure would be helpful to compare and contrast (is a better word correlate?) RAST and SPT results with peanut component test results.

Please tell me their working to do THIS?

Forgive me if this has been mentioned (overwhelmed these days) -- is there a study in the works to do just that? 


ETA -- YES!!! I do want to use the word correlate.  Duh-a-million-times-duh!

[TwoDDs]

Thought about this a bit more last night.  For someone like my dd - who appears to have a very high threshold (I'm guessing the reason for no reactions - right?  It's as good a guess as any) - perhaps the value in testing is demonstration of rightmindedness re: safety and accomodations.

If you have a child like lakeswimmer or ajasfolks (one who is reactive in the past and/or present) you kind of have that on your side.  - "See my boy's hives?  That's a reaction - he's really allergic."  But if you have my stalwart and constant kid (8 with no reactions for 4+ years and that was egg and at home) - maybe papering the reality of her allergy helps her current caretakers who have seen nary a symptom of allergy believe that I am not asking for unnecessary accomodations.

I called my insurance company about coverage and they seemed to believe the testing is covered if ordered by her allergist, but are double checking that for me.